BATAVIA/”I Hate Autism, Not My Child”: A Parent’s View on Raising a Child with Special Needs – Video News Service

Ashley Manuel of Batavia with her first self-published book, “I Hate Autism Not My Child.” Manuel says her book is the perspective of a parent, a mother raising a child with special needs.

Raising children brings new challenges every day. When you add an autism diagnosis to the family dynamic, things change for the entire family. From simple things like attending a sibling’s sporting event or sleeping through the night. The entire family must come together as a group to help every day.

Ashley Manuel began journaling to cope with the emotional aspect of raising four children and a diagnosis she didn’t expect.

“Well, how did it start? When he (Nicky) was diagnosed (at age 3), I was lost and scared. I was already a mother of three, but then the birth of a child with special needs rocked my world and I didn’t know what to do, so I started joining all these mothers’ groups,” says Manuel.

After Manuel participated in the mothers’ groups, she realized that she did not feel autism the same way as the other mothers in the group.

Ashley Manuel with her son Nicky, who is currently 7 years old and non-verbal. When he was older, he was diagnosed with autism 3.

“I noticed there was so much acceptance and awareness and this kind of celebration, and I felt completely different. I was really struggling. So I started therapy and the therapist says I should start journaling. Just start writing down all the things you don’t say out loud, anywhere you want to say it, even to my husband (Nicholas). I really didn’t let him know how much I was struggling with this. And so I started writing diaries for a long time, and eventually they turned into chapters about how autism crept into every aspect of my life, even in relation to his siblings, his marriage, and the world around me and how they perceived my son . So I started categorizing them into these little sections, and honestly I never thought it would go anywhere until I told one of my friends, Deborah Foley, about it, and she’s a writer and she was like, “You have to publish something.” that after she read it.”

Foley is now working on her fourth book and writing young adult novels.

“I said I don’t even know where to start. I don’t know how to do this. I don’t think it’s going to be very well received, and she was like, “I don’t care, we’re doing this, and even if you don’t release it, guess what?” You’re right, and it’s yours. So we started the process and it took a long time and required a lot of editing because I’m not good at grammar or editing. It was mostly word vomit on a page on my computer.”

As Manuel put the chapters together with Foley, he could see the book taking shape. She says at the time she was scared and felt vulnerable expressing herself and her words in public, but Foley continued to encourage her.

Nicky with his father Nicholas

“She said: You can do it. I know you can do it. And she urged me on. And then I said, “Well, I have to get another person to read it, you always want good feedback.” So I had my husband read it, and in 16 years I’ve seen that man cry maybe twice. At 16 years old, he is simply a pillar of strength. He’s calm as a cucumber all the time. Nothing really shocks him. Oh my God. He cried. He said it’s so good. It’s that good. So I thought, OK, once I get over you, I’ll do it. I’ll post it there.”

Manuel says she reached out to KDP (Kindle Direct Publishing), a self-publisher through Amazon. She says the only difficult thing about it is that you have to market the book yourself.

Link to Ashley Manuel’s author page below:

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“I Hate Autism, Not My Child” can be found on Amazon.

Manuel says her book is the perspective of a parent, a mother raising a child with special needs.

“This is a love letter to other parents to say that it’s okay to be human and it’s okay not to love and celebrate everything that comes with autism.”

How did you come up with the title?
“I have to be honest, it’s the second chapter of the book and I felt like there was a fine line in the autism community. And some people think that you are autistic. You are defined by it, right? Others think, no, I’m Nicholas, and I happen to have autism, and I see that line, and I’m fully aware that the title isn’t that, and it hasn’t really been well received yet.”

Manuel says that when she began working on the book, the title of Chapter 2, “I Hate Autism, Not My Child,” touched her emotionally.

“I remember crying as I typed it into my computer. And when I first said it, I remember crying because it comes with a lot of guilt and shame, but also with being human and saying: This is hard and I’m struggling and we need help. Parents, I keep seeing in all these groups and everything that they’re struggling and it’s hard for them. And it’s okay to say that I hate that sometimes. That doesn’t mean you hate your child, right? You know, in fact, we probably love our children. This is my golden child, you know, I have four of them and you know they’re like, oh, Nicky’s your favorite, you know? But he is the one who needs me the most. And I feel like when you have multiple children, every parent has to focus on the one who needs them the most at that minute or that day or that. And unfortunately for them, for my girls, which is also a chapter in the book about being a sibling to a child with special needs, he needs me the most all the time.”

Manuel says she talked to her girls and apologized to them for the things they might have to miss.

“Our whole family is really concerned with autism and Nicky’s disability. So when we go somewhere or do anything as a family we have to prepare very well, sometimes we just can’t go, often we go into it unknown and then leave early, and my girls have to endure that, you know they have fun, they’re safe, but then they look at us and it’s this face, and it’s like, I’m sorry we have to get out of here, we have to go.”

Nicky with his siblings

Manuel says her three girls, Leilah (15), Miyah (13) and Stellah (10), are very understanding and understand.

“They are just great siblings for this little boy. I will take my last breath on earth in peace, knowing that they will watch over him and make sure he is well. Wherever he is, he will always have her. They showed me how to play with him, they were just goofy and loud and included him and immersed themselves in his world and his space, it was magical to watch and they still do it, it’s such a blessing. I hear so many parents worry about having an autistic child, wondering if they should have another, if we can handle it, and if we can put another on our plate. They will be absent and give a lot of attention to the special needs child, but this sibling is a blessing. My girls, on the other hand, are compassionate, empathetic, they know autism. They see children with special needs in their school and they instinctively care for them, include them and say hello. To them it’s not strange, it’s just autism. They know it, they love him and he loves them, his laugh is deepest and loudest with his sisters, I can honestly say they are his only friends.”

Manuel says navigating the school system with a child with special needs is also difficult and challenging.

“You don’t know the laws. Since I am currently a parent, I ended up hiring a parent representative, which was a dream come true for me. I really advocate for this. Hire a parent representative.” Manuel says a parent representative can usually be reached for free through the New York City office or the school.

After learning about a diagnosis for the first time, Manuel says it’s important to find his people.

“Stop Googling. That’ll just send you down the rabbit hole of fear, right? Find your tribe, find a safe person, find a place where you can be yourself and say the things you want to say.”

Manuel says she is part of five different Facebook groups that give her a place to connect with like-minded people.

“The reason I like them is because they express their honesty in them. They talk about the difficulties they are going through and often you see in the comments where they give tips or tricks that have helped with those difficulties or just encouragement and that is really what you need to hear. The most thing you want to hear from a parent raising a child on the spectrum is that you are not alone.”

Manuel’s advice is not to plan for longer than a year.

“Live in the moment. You’re fine, and you’re doing great, and it’s okay to be human, and it’s okay to feel that way, and it’s okay to not celebrate everything about autism because out of perspective of a parent it’s not, being a parent is always great, it’s not always wonderful, it’s scary and it’s lonely and it’s painful, it’s very painful.”

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